Zach has been living with HIV for a few years. Over that time, he has learned a lot about HIV. And while he is currently undetectable and confident in his regimen, he has learned to monitor his body pretty carefully.
A couple of weeks ago, he noticed a symptom that he hadn’t experienced before. Now again, Zach knows his own body, and he knows this isn’t a symptom he has experienced before. Furthermore, he is educated enough about HIV to also know that this isn’t a typical HIV symptom
To say the least, Zach couldn’t help but feel worried. He asked himself: What if this is a symptom of my medication? Or could I have something that might somehow affect my HIV treatment? It could be anything. But could it be something to worry about?
And so he made an appointment with his physician.
After asking him a few questions. His doctor wanted to know when Zach first noticed this symptom. An easy question for Zach to answer. She also wanted to know if the symptom was causing Zach any discomfort. He admitted to his doctor that no, he wasn’t feeling discomfort. But that didn’t leave Zach any less concerned.
After examining him, Zach’s doctor said: “I don’t see a need to do any testing right now. Keep monitoring yourself like you have been. At this point, I recommend we watch and wait.”
Zach expressed his concern but his physician insisted the “watch and wait” or, as she called it, “watchful waiting,” was the best approach.
That evening, Zach wasn’t feeling all that happy with his doctor’s decision. He realized his doctor was trying not to set off any alarms and was, instead, trying to be reassuring. But by Zach’s way of thinking, any out-of-the-ordinary symptom should be thoroughly explored, including whatever testing might be required. Zach’s doctor had done a good job in treating his HIV, and he trusted her. Yet, he had a nagging fear that his doctor was being too casual and, in effect, not taking an educated patient seriously.
Have you ever felt like Zach? When you’re living with HIV, you learn what it takes to maintain your health as well as possible, including self-monitoring for familiar as well as unfamiliar symptoms. How can you help not being alarmed when you do experience an unfamiliar symptom? And while you trust your doctor, it’s hard not to view “let’s wait and see” as taking an unnecessary risk.
So what do you do? Well, here are some ideas to consider:
Ask more questions. Has your doctor seen anything like this before? If so, what was the ultimate diagnosis? And was it related to HIV or was it related to another diagnosis? If your doctor has not seen this symptom before, or at least not in someone with HIV, what are their initial thoughts about it? In other words, get a sense of our doctor’s experience with patients who share your symptom or symptoms.
Get clarification on exactly what you’re waiting for. Hopefully, your doctor can give you the specifics regarding just want it means to be watching your symptom. Watching to see if it persists? Worsens? And if so, worsens how? Changes in some way? And for how long are we watching before we take action? Getting this clarification might give you at least some peace of mind, knowing your doctor has a strategy in mind.
Also get clarification on potential actions your doctor is considering. If and when your doctor decides it is necessary to action in regard to your symptom, what will the action be? Further testing? A referral to a specialist? A medication? Again, ask your doctor to be as specific as possible.
And then do some of your own research based on what you hear. As always, stay on top of your health.
Be willing to trust your physician. At least to a point. Have you had a good track record with your doctor? If so, then this may be a good reason to give them the benefit of a doubt and trust that they know what’s best, and be willing to do some watchful waiting alongside your doctor. Again, be aware of the specific parameters your doctor had laid out in terms of what you are watching for and for how long.
Face the fear and anxiety. This is your health. And an unfamiliar symptom is scary. Of course you want to take the best possible care of yourself, including making sure your doctor is following up on anything and everything that might have a negative impact on your health. Don’t swallow your feelings. Feeling fearful and anxious is normal in a situation like this.
Accept that uncertainty is part of life. Humans sure don’t do well with uncertain situations – we want to know! And have control! And one of the greatest lessons of a chronic condition like HIV is that life is uncertain. This is another one of those times when you may have to sit with your uncertainty, at least for awhile. You’ve been down this road before.
Pay attention to your self-talk. Managing the emotions – especially fear and anxiety – that might be coming up for you starts with the voice inside of your head. All those what-if’s can lead to what mental health professionals call “catastrophic thinking,” assuming the absolute worse. And when we don’t have information, unfortunately our minds are all to willing to fill in the gap, and what better way to do it than imagining the worst? Well, actually there is a better way. It’s only human to conjure up catastrophes in our minds. But we don’t have to follow those thoughts down the rabbit hole. Instead, work with yourself to remain optimistic during this uncertain time. Your self-talk might include: “I trust my doctor and we’re watching this together.” “I’ll know when I know, the answers will unfold over time.” “Whatever this is, I’ve got lots of support.”
And then get support. Talk it out with friends, family members, who are willing to listen. Talking helps you to keep your perspective and not fall into catastrophic thinking.
As always, be your own best advocate. Keep your doctor informed of anything related to your unfamiliar symptom or symptoms that causes you alarm, as well as any physical discomfort or interruptions of your daily routine that you experience. This is your health. And you and your doctor are a team. So don’t be hesitant to be high maintenance.
If you consider a second opinion, consider it carefully. If you sense that your physician is not being as attentive as you need them to be, and your unfamiliar symptom, or symptoms, continue, then you may want to consider getting a second opinion. If you do, make sure you are going to a doctor who practices the specialty most likely to treat your symptom. Ideally, your doctor should be part of this decision and even recommend the specialist.
But also consider the economics. If you are going to seek further medical attention, or demand further testing or treatment from your regular physician, consider the costs involved. Medical tests are expensive, and drive up healthcare costs that must in turn be passed onto the consumer. And that’s you. This is not to imply that you should deny yourself needed testing or treatment. But we all benefit when, along with our physicians, we ask the question: “Is this really necessary?”
Symptoms that seem to come out of nowhere can be scary. Being told by your doctor to “watch and wait” can prolong the uncertainty at a time when you want answers. Get specific with your physician regarding their strategy. Get informed. Advocate for yourself. And follow your instincts. Nobody knows your body like you do!
Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.